Welcome to the school of Lyme. 6 tips for those newly diagnosed with Lyme disease.
by Jennifer Crystal
Every day, I receive emails from people who have recently been diagnosed with Lyme disease. As most of us do when we hear a new medical term or leave a doctor’s office, these people frantically search the web looking for information. Sometimes they come across one of my blog posts. Then they write with questions about treatment, with requests for finding a good doctor and with prayers that I will be able to offer them some hope. Most of all, they want to know: “What do I do to get better?”
Because I find myself offering the same responses to many such patients, I thought I would create a “School of Lyme For the Newly Diagnosed.” Consider this a brief survey course on tick-borne illness, open to anyone who wants to learn the basics of what to do when you get (or suspect) a Lyme diagnosis.
Lesson 1: It’s Lyme, not Lyme’s!
It’s important to know the correct name of your disease! Many people mistakenly call it Lyme’s disease, assuming it was discovered by a Dr. Lyme. In fact, Lyme is named for the town in which it was first detected: Lyme, Connecticut. As for the names of co-infections, those are not as simple, but should still be part of your working vocabulary; we’ll get to those in Lesson 5.
Lesson 2: All cases are different
Everyone’s looking for a one-size-fits-all treatment protocol. Unfortunately, that doesn’t exist, and here’s why: Lyme bacteria, called spirochetes, impact every victim differently. It depends how quickly the infection was caught and diagnosed; how far it’s spread, and to where. The bacteria can affect different organs, muscles, bones and cells in different patients. It can cross the blood-brain barrier and enter the central nervous system. Moreover, there may be co-infections present—the list goes on and on. A Lyme doctor can see a thousand patients and use a thousand different protocols. Telling you what antibiotics I took won’t help you; you need to work with your doctor to figure out the best combination for you.
Lesson 3: Find an LLMD
An LLMD is a Lyme Literate Medical Doctor. This is a physician who has trained with ILADS (The International Lyme and Associated Diseases Society). Some practitioners claiming to be Lyme literate may not be versed in all tick-borne disease. The best way to know you are getting good treatment is to make sure your doctor is ILADS-trained. You can find an ILADS-trained physician in your area through Global Lyme Alliance, by clicking on GLA.org/find.
Lesson 4: Get tested for co-infections
Unfortunately, ticks don’t only carry Lyme disease. Many of them harbor what are known as co-infections: other tick-borne diseases besides Lyme. The most common are babesiosis, ehrlichiosis, anaplasmosis, and bartonella, but there are many others. It’s critical that you get tested for co-infections along with Lyme disease. If you are receiving treatment for Lyme and haven’t been tested for other tick-borne infections, you may be fighting only half the battle.
Lesson 5: Take probiotics
Antibiotics kill spirochetes, but they also kill the good bacteria in your gut, which can cause a yeast infection. To combat this, take probiotics (available at any pharmacy or health food store). Important: make sure you take the probiotics at least two hours before or after you take the antibiotics; if you take them too close together, the antibiotics will kill the probiotics.
Lesson 6: Don’t panic
The information available at our fingertips in this internet age is a double-edged sword. You may read stories that terrify you. Remember, every case of Lyme disease is different. If you catch tick-borne illnesses and treat them immediately, chances are you will not suffer as long those who have been sick for many years. Don’t let my story or those of other chronically ill patients frighten you. Do let these stories offer you hope, however, especially if you have been sick for a long time. I am living proof that even the worst cases of tick-borne illness can eventually be wrestled into remission. I am living proof that long-term treatment works. I am living proof that it’s a long road between being bedridden and skiing, but it can be traveled.
Most importantly, know that you are not alone in this fight. There are many of us battling tick-borne diseases right alongside you. We feel your pain. We validate your suffering. And we know that it can get better. There is hope!
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock for which she is seeking representation. Contact her at:
Bartonella is a tick-borne co-infection. As with Lyme disease, its symptoms can be debilitating.
While the most common tick-borne infection is Lyme disease, infected ticks may carry more than one kind of microbe or disease producing organism that can make humans very sick. The microbes are called co-infections, the simultaneous infection of a host by multiple pathogenic or disease-producing organisms.
Dr. Mayla Hsu, GLA’s Director of Research and Science, and Dr. Harriet Kotsoris discuss Lyme and its co-infections in a recent podcast. Below is an excerpt of the podcast that focuses on Bartonella and the Powassan virus.
Host: I’ve heard there’s a new tick-borne infection that’s somewhat controversial called Bartonella. Mayla would you like to tell us more about that?
Dr. Hsu: Sure. Bartonella is a bacterium that’s controversial in discussions of tick-borne illnesses because there is quite a lot of debate about whether it is actually spread by ticks and causes human disease. Now we know that it’s spread by fleas and body lice and sand flies, but ticks are a somewhat new idea that is gaining traction in some quarters. Bartonella is in domestic and wild animals and it causes various illnesses that we know about, such as cat scratch disease and trench fever, where people get bitten by fleas that are feeding on animals or by body lice. Now in recent years, Bartonella bacteria has been found in ticks in many countries around the world. The ticks do feed on host animals that carry Bartonella so it’s not surprising to find the bacterium in the ticks.
Humans with tick exposure, like hunters, have been found to have antibodies against Bartonella so that indicates they’ve been exposed, but whether Bartonella actually causes illness in healthy people is under debate. There’s no question that Bartonella is a big problem for people who are immuno-compromised and they can get sick, but even there we don’t know how much of it is acquired from tick bites versus flea bites. Now, if people do get Bartonella it’s diagnosed by looking for the DNA of the bacteria or by growing or culturing the bacteria, and then it is treated with antibiotics. Often the first symptom is striations or lines that look like stretch marks on the skin and it can progress into fever and lead to very serious illnesses including things like heart inflammation or endocarditis.
Host: A new class of microbe that is very different from the bacteria and parasites we’ve been hearing about are the viruses spread by ticks. Since they can’t be treated with antibiotics, should we be worried about them?
Dr. Hsu: The virus that is spoken about as transmitted by Ixodes or black-legged ticks, is the Powassan virus, which is also sometimes called deer tick virus. Powassan virus or deer tick virus are actually two different genetic lineages of very similar virus so let’s just call it Powassan virus. It was first described in the 1950s. Powassan virus can be very serious because in half of cases, 50% of cases, people have continued long-term neurological consequences and disability due to encephalitis, or inflammation of the central nervous system. The virus actually infects the brain. The fatality rate can be 10 to 20%, especially in the elderly, the immunocompromised or people with other health conditions.
The symptoms for Powassan virus are fever, vomiting, weakness, memory loss, and seizures. The diagnosis is made by doing a blood test or a spinal tap looking for antibodies against the virus. The treatment for Powassan virus is, as you said, it can’t be treated with antibiotics. They don’t work against the virus, so the treatment is mostly supportive. That is providing respiratory support, fluids, drugs to reduce brain swelling. Now, luckily Powassan virus is rare. There were 13 cases that were reported in 2013 to the CDC, so it’s actually not a really prevalent disease. It is found in actually a very low percentage of ticks, maybe three to 5% of ticks are co-infected with Lyme disease and Powassan virus, so it is there. It is present so we have to be concerned about it. Now overseas there are many more cases of a brain infection caused by ticks, there is tick-borne encephalitis, and that is also caused by a virus, a tick-borne encephalitis virus, that has been recorded and associated with serious illness.
Host: Obviously a lot of people haven’t heard of these co-infections spread by ticks, can you tell us about some of the major problems and how we cope with tick-borne diseases?
Dr. Hsu: One of the biggest issues is probably awareness. There are medical professionals who have heard of Lyme disease but may not have heard of these others.
Dr. Kotsoris: Health authorities may not test for some of these if they’re unaware of them and then ordering the right diagnostic tests has to be done. The Lyme disease diagnostic by itself is highly inaccurate and so even getting that diagnosis is problematic. Without reliable molecular diagnostic techniques some tests are only available experimentally or at limited federal or state levels. Initial diagnosis is very difficult and you can’t sit around and wait for an antibody response, so physicians have to be better diagnosticians. They can not, as I said before, they can not sit around and wait for convalescent titers, antibody titers to indicate that the patient has had the infection. That’s four to six weeks after the initial infection. Until the FDA approves some of these experimentally available techniques, makes them more widely available to the frontline physician, we have to rely on clinical diagnosis.
Host: What about the treatment of tick-borne illnesses?
Dr. Kotsoris: It’s important to note the treatment for Lyme disease doesn’t cure the others necessarily, so proper diagnosis is critical to getting proper treatment that is specific for the co-infecting microbe. Also having two infections might make the symptoms tougher to treat. There are some research studies that indicate that co-infections actually make the illnesses more powerful individually. For example co-infections of Babesia and Lyme disease may make it harder to treat the patient than if he or she had only one of those.
Host: Are there other issues we should be thinking about with regard to tick-borne co-infections?
Dr. Hsu: I think there’s a lot we simply don’t know about the biology of co-infecting pathogens. For instance, we don’t understand a lot about how they grow in their host animals, more than one microbe. We don’t really understand how they get into a tick and how they survive in the tick, and very basic questions like infection of humans, from ticks to humans.
Host: Given all the lack of awareness, what kind of studies are needed to better understand and treat tick-borne diseases?
Dr. Hsu: There are some emerging illnesses now that are suspected of being caused by ticks but we don’t know for sure. We need more research. For instance, there’s a new illness that’s emerging called stari, S-T-A-R-I, and what that stands for is Southern Tick-Associated Rash Illness. We know that this is caused by a tick bite but we still don’t know what the pathogen or the microbe is that is responsible for the illness. Diagnosis, which we talked about is sometimes complicated. Some of the technology to diagnose some of these co-infections, like really sensitive molecular biology, looking for the DNA of the organism, is not readily available in some parts of the world.
Dr. Kotsoris: Travelers to other parts of the world may come home to the United States where the best of medical care is apparently available and doctors here may not know about those tick-borne illnesses, so education has to be a big part of it.
Host: Tick-borne diseases are a very big problem. Let’s hope that public health officials and the funding organizations take them seriously, especially since climate change is going to mean more sick people, more school and work absences, less productivity, and have a huge economic impact. Thank you for all the discussion today and thank you to all of you listeners.
The most common tick-borne infection is Lyme disease. However, infected ticks also carry and spread numerous co-infections.
The newest Global Lyme Alliance podcast, with GLA’s Dr. Harriet Kotsoris and Dr. Mayla Hsu, discusses Lyme disease and the co-infections that are often transmitted along with the initial tick bite. Below is an excerpt. CLICK HERE to listen to the entire podcast.
Host: In this podcast we’re going to expand our discussion to include co-infecting tick-borne diseases that are often transmitted along with Lyme. I’m in our studio with Dr. Harriet Kotsoris and Dr. Mayla Hsu who are science and research officers at the Global Lyme Alliance. I’ll start off by asking, what is a tick-borne infection?
Dr. Harriet Kotsoris: A tick-borne infection is an infectious disease spread by the bite of an infected tick. The most common is Lyme disease but many others are present in the same tick bite. Depending on the location and the season, up to half of all ticks may have had more than one kind of microbe or disease producing organism that can make humans very sick. The list of microbes is expanding up to 11 or 12 at last count, but we’ll focus today on the major ones. These are called co-infections, the simultaneous infection of a host by multiple pathogenic or disease producing organisms.
There is an increasing number of ticks that are multiply infected as we just said. In a recent west European study of Ixodes ricinus ticks, very similar to the American black legged deer tick, up to 45% of those ticks were co-infected with up to five pathogens or disease producing organisms. We have a similar experience here in the United States.
Host: How many people get tick-borne infections?
Dr. Kotsoris: The Centers for Disease Control calculates about 330,000 Lyme disease cases per year but it may be even over 400,000. It’s not really understood how many of these are also infected with other microbes, which in some cases cause different illnesses that require different diagnostic tests and different treatments.
Host: What can you tell us about the ticks that spread these diseases?
Dr. Mayla Hsu: Well in the United States there are different families of ticks that may be co-infected with various pathogens. As Harriet just mentioned, the Ixodes ticks or the black-legged ticks are now in half of all United States counties. There’s another tick that is further south, known as the Lone Star and there is also an American dog tick called Dermacentor that also harbors infectious microbes.
Host: How about internationally?
Dr. Hsu: Well it seems that ticks are generally found in all temperate climate zones, so there are the Ixodes species in North America, these are also found in Europe and Asia, there are other ticks found in Africa, parts of temperate Africa, that infect humans as well as animals there, and they’re responsible for causing relapsing fevers. There are soft ticks, Ornithodoros, the Ornithodoros family of ticks, that are found in South America and Western Africa, and these too are associated with causing diseases in humans. The jury is still out in Australia. There are ticks there but it’s not known whether or not they’re correlating with human disease.
Host: What do we know about changing tick geography?
Dr. Kotsoris: It seems that in the United States, the geographic range where ticks are found is expanding and we know that with climate change the range is also changing, so for instance, it is expanding northwards into Canada where Lyme disease was never a concern, it now is starting to emerge. We can expect and see more tick-borne diseases elsewhere, also spreading in through the United States. These are now classified as emerging infections and so public health authorities are very concerned about this and tracking the emergence of more tick-borne illnesses.
Host: What are some of the emerging tick-borne diseases and again we’re going to focus only on the major ones about which the most is known.
Dr. Hsu: One of the more interesting tick-borne illnesses that has been emerging in recent years is called babesiosis. This is an illness caused by a parasite that’s very similar to malaria. It’s called Babesia, Babesia microti. This is characterized by recurrent fevers, so people get fevers that spike and then go away and then come back over and over again, chills, muscle and joint aches and pains and it can be actually fatal in rare cases. The diagnostic test for this is not a blood test looking for antibodies, rather the blood is examined under a microscope and here you can see the organism actually growing in red blood cells, so just like malaria it grows in red blood cells and you can see it in a blood smear and the treatment required for this is also very similar to anti-malaria therapies, so that’s drugs that are similar to quinine but also anti-protozoan drugs like Atovaquone, also known as Mepron, and antibiotics, azithromycin and clindamycin.
About 1,800 people were reported to have gotten babesiosis in the year 2013, and the numbers are rising so where we see Lyme disease we are also starting to see more and more Babesia, and it’s important to point out that the treatment and diagnostic for Babesia is different from that of Lyme disease, so if Lyme disease is suspected and is looked for, and treated, a person who also has Babesia will not get adequately diagnosed or treated and can continue to be ill.
Host:There are several bacterial diseases that are spread by ticks that have been getting more attention in recent years, Anaplasma and Ehrlichia.
Dr. Kotsoris:Yes, historically these started out as veterinary diseases. They were identified in the late 80s and early 1990s, after having been studied as long-standing veterinary problems. These organisms belong to a group known as the Rickettsiae, Anaplasma, Ehrlichia, and Rickettsia itself. These are what we call obligate intracellular parasites. They’re bacteria that only live inside the cells of another organism, and that’s how they affect humans. Human granulocytic anaplasmosis is what we call a gram-negative bacterium of the rickettsia family. It invades white blood cells after a tick bite by an infected tick and it travels and lodges within granulocytes or the neutophils, the white blood cells of the human being.
About one to two weeks after the bite, the patient will develop spiking fevers, headache, drop in white blood count, drop in platelet count…the platelets are responsible for clotting blood, and a rise of liver function tests indicative of an inflammation of the liver. These organisms are very smart and release a chemical substance known as a chemokine, or a cytokine, interleukin-8 that actually is an attracting chemical for white blood cells to help propagate the infection throughout the body. The diagnosis has to be made by blood smear because the comparison of acute and convalescent sera that is the development of convalescent antibodies may be too late in the game, that the patient will have been compromised medically and treatment will have been delayed. The diagnosis can also be made by something known as polymerase chain reaction and the treatment is doxycycline, 100 milligrams twice a day, similar to what’s used in acute Lyme disease and the treatment is until three days after the disappearance of the fever.
Related is something known as human monocytic ehrlichiosis. Ehrlichia and Anaplasma were used interchangeably in the past, but now they’ve been divided into separate categories because of the bacterial composition. Human granulocytic anaplasmosis is carried by the black legged deer tick, Ixodes scapularis, Ixodes pacificus on the west coast, but this vector for human monocytic ehrlichiosis is the Lone star tick, or Amblyomma americanum and Dermacentor variabilis, the American dog tick. The classic infection in the Midwest in particular is by Ehrlichia chaffeensis and Ehrlichia ewingii, more so chaffeensis. Usually peaking in July, usually affecting males older than 50 years old, and again, within a few weeks of the tick bite, the patient develops headaches, muscle aches, otherwise known as myalgias, fatigue, a drop in white blood count, a drop in platelet count, fever, gastrointestinal systems, which may lead to also respiratory insufficiency and kidney failure.
The three states most affected by Ehrlichia chaffeensis and ewingii are Oklahoma, Missouri, and Arkansas. They account for 30% of the reported cases of these bacterial species. The numbers have been reported in the low thousands over the last few years. In 2009, a third cause of human ehrlichiosis was identified in the upper Midwest. This has been known as Ehrlichia muris-like agent. Interestingly, it also exists in Eastern Europe and Asia. The detection of this pathogen or disease producing organism is by looking for the DNA, that is the genetic material, of this organism in the blood of patients. About 2.5% of Ixodes scapularis ticks are infected by this E. muris type agent. Note that this one is spread by Ixodes scapularis, the black legged deer tick, not the Lone Star tick as in human monocytic ehrlichiosis.
One of the better known bacterial infections that people read about, hear about, especially with people traveling into the Rocky Mountain area, into the Midwest, into the Southeast, is something known as Rocky Mountain Spotted Fever. This is Rickettsia rickettsia…it is spread by the American dog tick, by the Rocky Mountain wood tick, and by the brown dog tick. There are reported 14 cases per million population, peaking in April through September. Despite its name, as I said before, it’s not confined to the Rocky Mountains, it’s also found in the southeastern United States. These bacteria, after the tick bite, travel within the blood stream and lodge within endothelial cells, that’s the lining cells of small blood vessels, and elicit inflammatory changes and make the blood vessels leaky, affecting all organs infected, especially the skin and the adrenal glands. The platelets responsible for clotting are consumed and you may have kidney malfunctioning.
Patient will present with severe headaches, high fevers, a few days after the bite and a few days after that, a spotted rash on the wrists, palms, and ankles. Patient may also have abdominal pain, nausea, vomiting, and other generalized symptoms. The mortality rate can be as high as 4% and this is caused by a delay in diagnosis and treatment. The treatment is doxycycline and patients do best, and have a much lower morbidity and mortality if they’re treated within five days of being infected.
Below is the full podcast with Dr. Kotsoris and Dr. Hsu. They continue their overview of Lyme and co-infections, specifically Bartonella and the Powassan virus.
Follow Global Lyme Alliance on SoundCloud to hear future podcasts.